What is FASD?

Fetal Alcohol Spectrum Disorders (FASD) is a term used for a spectrum of conditions caused by fetal alcohol exposure. Each condition and its diagnosis is based on the presentation of characteristic features which are unique to the individual and may be physical, developmental and/ or neurobehavioural.

Alcohol can cause damage to the unborn child at any time during pregnancy and the level of harm is dependent on the amount and frequency of alcohol use which may be moderated by factors such as intergenerational alcohol use, parent age and health of the mother (nutrition, tobacco use) and environmental factors like stress (exposure to violence, poverty).

Characteristic features (physical, developmental and/or neurobehavioural) within the FASD spectrum are seldom apparent at birth (unless the facial and growth factors related to Fetal Alcohol Syndrome are observable) and may not be noticed until the child reaches school age when behavioural and learning difficulties become problematic. Fetal Alcohol Syndrome is considered the most serious end of the spectrum and is the only diagnosis within the spectrum which carries with it characteristic facial features in addition to the neurobehavioural symptoms that affect individuals across the spectrum.

FASD is referred to as the ‘invisible disability’ as it often goes undetected, whether it be overlooked, ignored, attributed to another known non-genetic condition or even simply blamed on ‘poor’ parenting or post birth environments. There is a lack of understanding of FASD in the service provider community. Assessment and service provision is evidence based. The presentation of ‘problem’ behaviours and the absence of biomarkers will typically result in assumptions about the individual which are unfair rather than helpful strategies based on knowledge that FASDs are a physical brain-based condition with behaviours as symptomatic of the brain.

Click here to see the affect that alcohol has on the developing fetus during the different stages of gestation.

Diagnosing FASD

Neurodevelopmental Disorders Alcohol Exposed (ND-AE) (subject to approval of the national diagnostic tool).

The Australian FASD Collaboration has developed a national diagnostic instrument for FASD. Under the recently announced Australian Government Action Plan to Reduce the Impact of Fetal Alcohol Spectrum Disorders 2013-14 to 2016-17, funding has been allocated to finalise the FASD diagnostic tool and to develop clinical guidelines for its use. The diagnostic tool will need to be trialled by health professionals as part of this process. NOFASD Australia will update its information on FASD diagnosis in Australia as information comes to hand. For more information on the development of the Australian FASD diagnostic instrument click here.

Living with FASD

The primary conditions common to FASD last a lifetime and may include the following which vary from person to person:

learning difficulties

impulsiveness

difficulty relating actions to consequences

social relationships

attention/hyperactivity

memory

developmental delays

major organ damage

Typically, unrecognized brain impairment with primary symptoms result in misunderstanding by those with authority who cast individuals with FASD as defiant or lazy. In an effort to meet unrealistic expectations, the individual develops secondary defensive behaviours which are then paradoxically used to stereotype and label the individual according to the observed behaviour. This unfairness reinforces the invisibility of the brain-based condition and perpetuates the individual’s sense of failure as they ‘can’t do’, rather than ‘won’t do’. Failure to meet expectations and the development of defensive behaviours leads to an increased risk of tertiary conditions.

These tertiary conditions can include:

incomplete education

involvement in the criminal justice system

family and economic dependence

poverty and homelessness

alcohol and other substance abuse

sexual victimisation

unplanned and early parenthood

difficulty parenting and subsequent risk for children.

Environmental Accommodations and Early Intervention

FASD as a physical brain-based condition requires environmental accommodations as we would expect in the case of any other physical disability. With a correct diagnosis and/ or early neurobehavioural intervention, coupled with appropriate support for parents and carers during childhood, the learning and quality of life outcomes for individuals with FASD can be vastly improved.

For many adults living with FASD, ‘interdependence’ rather than a goal of ‘independence’ acknowledges the need for appropriate supports to sustain the capacity of the individual to engage in social and economic life. It is crucial that accommodations are developed in full consultation with the person living with FASD as the needs of every person are different.

Some useful support strategies and case-management approaches may include:

Non-traditional education approaches that recognise individuals living with FASD do not learn in mainstream approaches which implicitly rely on functioning memory, cause and effect reasoning, filtering of external stimuli, planning, sequencing and the acceptance of unexpected environmental change

Short term goal setting with realistic expectations, intensive support and follow-through

Memory prompts

Simple visual tools used for planning and sequencing activities within timelines

Concrete language, structure and routine

The use of the public trustee for financial management

For more information on strategies you can check out the selection of NOFASD Australia Fact Sheets. Please let us know if you have any suggestions which will help other parents and carers. NOFASD Australia Fact Sheets

For more in-depth information and academic references on FASD check the selection of publications and resources in the NOFASD Australia Research Library.

The following short films provide an insight into living with FASD from the perspective of birth mothers and adoptive and foster families.

We are inspired every day by the personal stories of individuals and families living with FASD. Help advocate for an improved quality of life for people living with FASD by sharing the highs and the lows of your personal story and strategies that others may find useful.